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Long Term Clonidine Issues, Sudden Change in HR or Sick Sinus

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Hi Everyone, 

I'm hoping for your help. I'm pretty active in the Facebook communities and such, but this is my first post on here. 

I have pretty severe Dysautonomia. I've been on Clonidine and Metoprolol for about 6 years now for control. A little over a year ago I had a cardiac arrest unfortunately, but it was due to Long QT arrythmia from malnourishment, I take supplements now. But anyway, prior to the CA, my normal heart rate resting was 80 to 100, with getting up, any activity I was anywhere from 120 to 200. So my whole life, I'd always been a tachycardia person. After CA, it basically reset my heart. My new normal resting is 60s, I'm symptomatic of tachycardia at 80s on up. Since then too I just take the clonidine 3x a day and metoprolol as needed for tachy issues.

All of a sudden starting Saturday morning, it's like I woke up and everything changed. I'd be anywhere from 40 to 120, bounce bounce, up down. With the lows I'd have low symptoms, with the highs, those symptoms. Its been so erratic and uncomfortable. I sure didn't want to ruin Easter, I'd called the after hours office to make sure they didn't feel I was in danger for a different arrythmia or something, basically just said to watch it. Typically if I have a bad heart rate deal, the metoprolol helps, but I also just always feel like if I could just get some sleep that night, then usually I wake up leveled in the morning. We were up all night with a low heart rate. I woke up yesterday morning and it was the same. They said I had to go to the ER, even though I knew it'd be a waste. Long story short, the dr definitely witnessed the dysfunction(70 bpm difference with a breath hold to listen) and basically just said it was part of worsening Dysautonomia. We knew that, but something clearly wasn't right. I really felt it matched a sick sinus, brady tachy syndrome.  Anyway,  had another bad night last night, such a low hr for me.

I finally got to see my dr this morning. He was astounded by the ER not listening, inproperly taking my bp. He feels that it's because of the clonidine. He said something can happen with clonidine after you've been on it for so many years, that it can cause this dysfunction to worsen. But so I assumed he'd want to take me off of it, but no, he wants to lower the dose, he believes that will help and that clonidine is very important for the Dysautonomia, but also because I have vEDS. I trust him, he's been a great dr and has treated everything. 

I just basically want to know, has anyone else been on clonidine for a few years and suddenly had something happen like this? I'm just really hoping and praying this helps because this having been symptomatic for the last 3 days and nights is for the birds. I'm going to lose my mind between the dizziness, palpitations, fatigue! If you dont have any experience with a sudden change or worsening with your Dysautonomia or the clonidine, please just put me in your thoughts or prayers that this works!

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Guest KiminOrlando

I don't have any experience with clonidine, but I have had progression of my dysautonomia to include low HR (I used to just have tachycardia) and my O2 dropping in the 80s - and the ER acting like they have no clue why you would come in. I usually talk myself through it by saying that my heart is okay and nothing is going to happen, the controller is just broken. After having a cardiac arrest, I can imagine it is incredibly distressing to endure these issues.

I just wanted you to know that you are in my thoughts and prayers and I hope they find some answers so you can have some peace.

Please keep us updated.


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